Monday, October 31, 2011

31 for 21: Day 31 Wyatt Rocks!!!

so, in case you were wondering, we think WYATT ROCKS!!!

and this about sums it up!!!!!

Sunday, October 30, 2011

31 for 21: Day30 It's Sunday Again....

this is sunday, and an unusual sunday for our family, because we will be traveling instead of attending worship service in our home church.   with very little exception, if it's sunday, you can expect that we will be in church somewhere, if not our home church!  

we have been blessed with a very supportive church family who were very attentive to our needs when wyatt was born and we received his diagnosis of Down syndrome.   our church family was so excited about his birth anyway, since he was such a surprise and we were so OLD!!!   (it was pretty weird having a baby at the same time those young girls i watched grow up were having babies!)   they turned out in FULL FORCE that first buddy walk when wyatt was just 4 months old....we have a team of almost 60 with us that day!   they have continued to support and encourage us in many ways since. 

what makes me sad right now is that every time that we put wyatt in the nursery at church, within that week he is SICK!!!    i know that there is no hard and fast data that kiddos with Ds are more prone to infections (or is there?), but i know that wyatt gets sick a whole lot more than our older boys did.  they were in the nursery or their preschool class starting about the time they turned 1!   and they loved it!   wyatt just seems to pick up every little cold that is out there, and after about a week it turns into a sinus, adenoid (no longer) or ear infection.   i know parents bring their kids to church with "a little cold," it's just so hard on wyatt, because he cannot seem to just get "a little cold" without it turning into an infection that requires antibiotic.  EVERY.SINGLE.TIME.  and it's about to wear me out!  and then when he gets sick, we are out of church.......again.....ugh!!!   

i want him to "build those immunities," but i also want him to stay healthy and be able to hear.  because once he gets sick and congested, we are never certain if his hearing is compromised.  if his hearing is compromised, the harder it is for him to learn to talk.    the longer it will take him....when it's taking a long time anyway.....  UGH!!!    poor little guy.....he wants to play with friends, too!   and he needs to learn to play with kids....... but for now, tim and i just take turns with him, bringing him into worship and Bible study until he becomes restless and needs to be taken out to walk around and visit with folks....  

thanks for listening......

Saturday, October 29, 2011

31 for 21: Day 29 Boys With Down Syndrome Like Legoland Too!

one of the things that forrest has always wanted to do is visit legoland, california!   well, it was highly unlikely that was going to happen anytime soon.....seeing as how we live in FLORIDA!!!   so imagine his excitement when we heard that legoland would be opening in florida this year!!!   add to that their recent promotion offering a free adult ticket to members of their "vip" club and we were ecstatic!!!    

and so here we are in tampa, staying with my childhood best friend, amy, and her family.....and we went to LEGOLAND FLORIDA yesterday!!!   woo hoo!   major excitement here!    what a blessing to have an open invitation to stay with them anytime we want to......and they live just 65 miles from the new legoland (which is on the former cypress gardens property....beautiful lush gardens!)  

and so as we waited in a VERY LONG LINE (i'm not complaining mind you....for 2 free adult tickets!), wyatt, forrest and i hopped out of the line to walk around and play instead of just WAITING.....  and then i noticed the looks, the stares, sometimes the pity......   I HATE THAT!!!    DO NOT FEEL SORRY FOR US!!!!!    we are like you.....a family out to have a fun day together at an amusement park!!!   but i digress....

we had a great time!   wyatt woke up around 8 am, and kept going ALL DAY LONG......until 8 pm last night when he crashed!   and he had a terrific time!   he was not the least bit grumpy....until we got back to our friend's house, and by then he was wiped out!!!!   for a boy used to napping 3 hours every day, he did great!!!   

so in case you were wondering, boys with Down syndrome like legoland just like boys without Down syndrome!!!  

Friday, October 28, 2011

31 for 21: Day 28 Sound Sensitivity!

i can definitely see a difference in wyatt when we change his therapeutic listening.  whether we change to a different cd, or we suspend the therapy because of ear infection, or it's just a little longer between therapies.....i see a difference!    he is much less focused, irritable, hits more.....etc!   so, we have seen great benefits from this therapy!  

one thing in particular that i saw a lot of sensitivity to recently was sound.   in retrospect, it was about the time one of his ears had either a clogged tube or the tube has fallen out (still not sure which at this point)......and we skipped a couple of therapeutic listening sessions during occupational therapy.  
the day i took the boys to walk on the beach, he REALLY did not like the sound of the surf, or the feel of the sand for that matter!  but the closer we got to the water, the less happy he was.....

earlier in that week, i also discovered that wyatt DOES NOT LIKE THE DRIVE THRU CAR WASH.....AT ALL!!!   i can't remember if he has never been through one, or maybe it's just been TOO LONG, but he was NOT happy while we were stuck in the car wash for what seemed like a very long time.....

so i'm hoping that we will get that sound sensitivity regulated better..... i hope that he will be able to tolerate the loud, noisy people and places someday.....   and i'm thankful for the progress that we have made!

Thursday, October 27, 2011

31 for 21: Day 27 Guest Post: My Son Is Not A Baby....

my dear friend bethene, graciously agreed to guest blog this week! her son josiah is amazing!   and bethene says this so eloquently.....


As a mother of a child with Down syndrome, there are lots of interesting and many not so interesting events that take place quite frequently in my everyday life. A recent episode caused me great pause and reflection.

Recently, in the course of our everyday lives, I was at a very public setting with lots of parents and kids. Josiah was nicely sitting at a table (during one of his “I want to do this, not what you want me to do, Mom” moments). A lady walked by and saw him. Ultra dramatically she exclaims, “OH MY GOSH, LOOK at this BABY!”

Standing just feet away, I was totally dumbfounded and silenced. My jaw probably even dropped.

Now, Josiah has been called “baby” quite regularly, but NEVER has anyone been this dramatic. Even as a newborn few people recognized him as having Down syndrome. If they did, I knew they had some sort of personal connection. No one ever fawned over him this way. Mind you Josiah is now 10 years old, 49” tall and let’s just say bit hefty in size.

I took in a breath and swallowed. In the mean time the woman prattled on, “Oh, is he yours? Is this your baby?” I breathe out. In goes another breath. Very directly, I say, “Yes, this is my son. But he is NOT a baby.” Another breath out.

She goes on to talk to him, telling him how adorable and precious he is. She asks me his name, about his school situation, etc. The whole time she is fawning over him, even touching him, much like a person would a newborn in their family. Seriously, she could have been a newborn’s grandmother! Exclaiming over and over how adorable he is. In the course of our conversation, I find out she has school age daughter, who I believe is younger than Josiah with learning delays (I think she meant Down syndrome, though she never said).

We talk a bit more, as I try desperately and hopefully not so obviously, to get Josiah to move out of this extremely uncomfortable situation. Finally, he stands to move on.
As we are leaving, I think… “Wow, she sees things totally different than I do. Is she involved in our parent support group? I don’t believe I’ve ever seen her before. Maybe I’ll get a chance to interact with her more hopefully without Josiah around! Did I seem rude and unwelcoming? Was I overly edgy? Do I say anything else? WHAT TO DO, LORD?” So I tell turn and heartfeltly say, “It was nice to meet you.”

She rapidly responds, “Yes, it was good to meet you. And I know he isn’t a baby, but he’s so precious and adorable and he’ll always be a baby to me.” I think she meant he’ll always be special, precious, cherished. At least I hope so.

I told her, “Ah, but he is 10 and he is a big boy and he likes to be called a big boy.” And we part ways.

Seriously, it has taken me a long time to process this interaction. Josiah is precious and sometimes quite adorable. I’ll admit I did not adore him just then… I was rather perturbed at his (all too frequent for my tastes) stubbornness. But I cherish him; I value his life. I love his opinions. And he dislikes being called a baby. Once he boldly proclaimed, “NO! Not baby, Josiah BIG boy!” Every since we have affirmed him in that area. In his presence we brag to each other about him. For example, “Wow, look at the BIG boy. Did you SEE that, Josiah just took initiative and fed the dog!” We even use it as a motivation to stop more childish behavior. “You’re a 10 year old boy and 10 year old boys behave like this, not like that. Where is MY Josiah? Please have him come back. This seems like a little boy.” It can be quite effective.

After taking some processing time since this event, I’ve decided a couple of things. One, as long as I have lived in the South, I am not a Southerner. People here seem to call him baby a lot. Most people don’t think twice about it. Even though it may not be just a southern thing, I do think it is more frequent her.

Secondly, I’ve decided it is okay to speak up. You see, I’ve taken a pledge to “Spread the word to end the word” ( and I will usually speak up when the “R” word it used in my presence. Education has been, and continues to be, my priority. I try not to get offended or angry. After all, I may have made similar mistakes before my personal education.
So, now I have decided that I will continue to seek to use the opportunity to kindly educate when people call Josiah a baby. Really, I do get that he will ALWAYS be my baby… so will Micah and Chairs, our other kids. But people don’t directly call them a baby. And neither do I with the exception of those rare moments like, “My baby is going off to college, sniff, sniff.” I’m still working on several possible speeches in my mind. I’m sure much like with the “R” word, I will sometimes choose to let the moment just pass. Usually I do this when I’m too overwhelmed or tired to make the effort. But if a doctor ever tells him to “Hold still, Baby” again, I think I’ll simply say, “He would prefer you say ‘Hold still big guy or big boy.” Or maybe I’ll reiterate as I’ve done in the past “Josiah, you are a big boy, please hold still”. But mostly I’ve decided I will begin to encourage Josiah to respectfully say “I’m a big boy, thank you.”

Finally, more than anything, I have had to process how differently we may view raising our child than some people. Some parents may be happy to have their child progress slowly and stay dependent. Some people have goals for their kids that involve safety and security as a top priority. Perhaps they don’t want their child to grow up. Perhaps they have given up and are tired of the battle.
However, we seek to help Josiah to grow and learn to the best of capability. I want to help him become his own self advocate. Really, it has never been different than my desires for my other kids. It takes him longer to learn. He may never be a rocket scientist, but then again, neither will my other son! Yes, Josiah can be especially huggable and adorable at times. He can melt my heart. He can infuriate me too. But we will continue to work towards his development.

You know, it isn’t that much different than the differences I’ve experience with parents of “typical” kids. Some focus on education; some focus on friendship and popularity; some allow sex and drinking and even drugs at their homes; some instill faith values; some don’t. Some choices may be wrong, others are just different. We all make choices about how to raise our children. It is part of the responsibility of parenting. We have to live with those choices and the fall out of them. It really is “More alike than different”.   This National Down Syndrome Congress video says it all.....

More Alike Than Different!

Wednesday, October 26, 2011

31 for 21: Day 26 Wyatt's "Flak Jacket/Bullet Proof Vest"

today i get to answer a question that my dear friend cory (dunn house happenings) asked the other day: 

"what is wyatt wearing?  it looks bullet proof!  ;)"

here are pictures of what she's talking about! 

wyatt is wearing a weighted compression vest!   a weighted compression vest "is made to calm and provide steady proprioceptive input, as the combined pressure and weight functions as a reassuring deep hug" (fun and function).  the vest can be worn either with or without the addition of the weights.

it is just another component of his sensory therapy.  when wyatt is a little frazzled, frustrated, or "out of control," we have found that it helps him to refocus!   and it really works, most of the time!   he does not wear it all the time, not even most of the time, but it definitely helps during therapies, and was beneficial during his playdate the other day as well!    he does not usually wear the weights, the proprioceptive input seems to be enough to accomplish the desired effect!  

Tuesday, October 25, 2011

31 for 21: Day 25 Guest Post: Letter to My Daughter's Teachers

a new facebook friend, jane, whose beautiful daughter also has Down syndrome, posted this yesterday in a small group that we both belong to, "smile".  this is a private group for parents of children who have Ds, to share our joys and concerns!   i really liked this, and asked if i could share it here.....enjoy!    
jane's beautiful daughter hannah,
the day of her first communion!


(I know that everyone has problems. This is a consideration of THIS problem.)
Please take a moment to imagine that my child is YOUR child.

Think about what it is like to live the life of the parent of a child with "special needs." Please understand, this life is not a bad life. It is a good life. But it is, at times, very difficult. Difficult in ways not thought of by people who don't live it.

Just for a moment---live this life. This is YOUR child. A very lovable, wonderful child. A beautiful child whom you love very, very much. But EVERY day when you send her off to school, you do not know what to expect. And sometimes, when the day is over, and things have not gone well, you have NO IDEA what to do about it.

You know you have a "special" child. A child who, in many ways, has exceeded all expectations. You also have a child who sometimes has behaviors which cause problems for her teachers, sometimes her peers, and most importantly, impede her own success and happiness.

And you never know FOR SURE if she has a real understanding of the appropriate behavior you are trying to teach.

Therefore you have no idea if you are doing the right things. You are even pretty sure that you have sometimes done the wrong things.

You have probably not done things that might have helped, maybe even done things that made matters worse. You have missed opportunities.

All you ever want is to make life better for this child. To help her reach her full potential----the same thing every parent wants for their child. But it is SO much harder to know HOW to do this---you don't even know what her potential is.

Sometimes you are afraid you expect too much. Often you are sure you expect too little.

And you never, EVER, know.

Some may say that NO parent ever really knows. ----of course that is true.

But, it is NOT THE SAME.


Sometimes it is very hard for you---the teacher. That is why I ask you to try to imagine our shoes. You have her for part of the day, for the span of one year. And then you move on.

This is our life. Every single hour of every single day. Yes, even when she is with you, she is with us.

For a lifetime.

We love our daughter very (VERY) much. We are not looking for anyone to feel sorry for us.

But, we would hope that you can have some understanding.

We particularly hope that you will try to understand if, sometimes, it seems that we question EVERYTHING that you do. In fact, we probably do----it is not meant to offend.

We also, question EVERY thing that WE do.

Monday, October 24, 2011

31 for 21: Day 24 Play Date!

wyatt got to have a play date with his best friend clayton today!   
they have not been able to get together since clayton's open heart surgery 3 1/2 weeks ago!     we are so happy that clayton's surgery was successful and that his recovery has been uneventful!!!   praise GOD!!!!

wyatt has to miss clayton's 2nd birthday party this weekend because we will be out of town, so he took his present to him today!   
they both really liked the big dump truck!                     

we are blessed to have clay and his family as friends.....  and we never would have met without that "little something extra" that wyatt and clayton have in common!!!!

Sunday, October 23, 2011

31 for 21: Day 23 Guest Blogger!!! "Down Syndrome Look A Like!"

one of my dear friends, anna, has graciously allowed me to share a recent blogpost of hers!  beautiful ellie is one of wyatt's many girlfriends!   enjoy this awesome post and beautiful pics of ellie!   you can follow anna's blog at "the chronicles of ellie bellie bear"....

"down syndrome look alike"  is by far one of the most common search terms on my blog so I thought that I would write another blurb about this. Do people with Down syndrome look a like? Yes and no. Yes in the sense that people with Down syndrome have just that, a syndrome.  With a syndrome come common physiologic characteristics.  Children with Ds may have all or just a few of these characteristics.  It is why when you look at someone with Ds, you suspect, well, that person has Ds. Common Physical Characteristics With Down Syndrome:
  • Almond-shaped eyes 
Almond-shaped Eyes
  • Simian Crease aka a single horizontal crease across the palm of the hand
Courtesy of Wikipedia
  • Low-set ears
  • Shorter femurs and humerus (thigh and arm bones--can be picked up on Ultrasound)
  • Small hands and feet
  • Small mid-face (i.e. nose, mouth, cheeks)
Small mid-facial features
Sandal Gap Toe
  • "Flatten" face (you can see this on their profile)
Flat Face: Look at how her forehead, nose, and chin are almost on the same plane.
No, because each child is an individual who received half their chromosomes from Mama and half from Dad.  As for that extra special chromosome, it came from either mom or dad.  What does that mean?  It means that each child looks like her family members.  I can be hanging out with Ellie at Andrew's work event and as people walk on by they say "yep, that has to be Andrew's kid".  No lie. They don't look at all alike?
Look at those chunky cheeks!
Eh, they aren't related are they?
Sorry for the older pic but it really gets the point across.
Nope, I cannot see the resemblance at all.
Ack!  They even have the same hairline.
What about me?  Guess which one is me?
Which one is me????  :)
Can't tell?  Here is a hint, recognize this facial expression?
How about now?
Left: Anna; Right: Ellie Just in case you couldn't tell :)
I wonder where she gets her spunk?
There you have it.  Yes, there are common physiological traits among those with Down syndrome, but more than anything, look past those traits and see the actual person.  You will recognize just how much each person is different and just how much she resembles her mother, her father, her siblings, her grandparents, her cousins.

Saturday, October 22, 2011

31 for 21: Day 22 BUDDY WALK SATURDAY!!!!

 today was the panama city beach buddy walk! what is a buddy walk? according to the national down syndrome society, "The Buddy Walk® was established in 1995 by the National Down Syndrome Society to celebrate Down Syndrome Awareness Month in October and to promote acceptance and inclusion of people with Down syndrome. Today, the Buddy Walk program is supported nationally by NDSS and organized at the local level by parent support groups, schools and other organizations and individuals."

it's been such a blessing to our family to have so many family and friends join us in our local buddy walk! the first year we participated, we had over 50 people join us! last year we had over 20, and this year we had close to 40 registered! it was a beautiful day, and we had a great time visiting with family, old and new friends, as well as other families whose children have Down syndrome! this is wyatt's first year to actually WALK the buddy walk too! what a great day we had.....

Friday, October 21, 2011

31 for 21: Day 21 We Are Better Because of Wyatt...

one thing that i have heard (and seen) over and over, is the insight that we (and many other parents/families) are better people because God chose to give us wyatt!   do i believe that God gave him to us specifically, for a reason, you bet!   "For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you a hope and a future."  (jeremiah 29:11)   i believe that every word in Scripture is true, and if i believe that, then i believe that God has a plan for each of our lives.  certainly sin in the world affects us, but i KNOW that God desires only great things for us!  

does that include having a child with a special need like Down syndrome?  absolutely!   would i have said that a little over 2 years ago....yes, but i would not have known what that good and perfect plan might be.

i know that i have seen changes in the men in our family; specifically tim and ethan, a tenderness that i had not seen before.   especially with ethan, the big brother who was 16 when wyatt was born!   to see him get down on the floor and play with our little guy is a beautiful thing!   forrest, who was 8 when wyatt was born, has grown in maturity as the "big" brother to wyatt.  he plays with wyatt, works with him, and encourages him!  i know that they will be great friends as they grow up together. 

tim and i have grown together through the experience of having wyatt.  he is our surprise, "bonus baby" blessing from God!    our marriage has been strengthened through everything that we have faced with wyatt....from his diagnosis, to his open heart surgery, to the daily therapies that we implement with him.   we need each other and we draw strength from each other as we face the challenges and joys of each day! 

i know, as i have said before, that i have developed a compassion that i did not have before for people who are different.  whether that difference is a physical or mental disability, a terminal illness, homelessness, divorce, or so many other life experiences that we have not have experienced before.  i have become the mom who tolerates a messy boy as he learns to feed himself, the mom who lets her toddler play in the rain....because he will play in the rain!   i am a much more relaxed mom in many ways.....and i am thankful that God is growing me through the life of our little man!

God is good.....  all the time....all the time.....God is GOOD!!!